Xtandi: I am using Xtandi about... - Advanced Prostate...

Advanced Prostate Cancer

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Xtandi

Domas profile image
11 Replies

I am using Xtandi about 2 months now. My doctor and I are afraid Xtandi may become resistant to the cancer. he target about 18 months only. Is there any person who is using Xtandi for more than 18 months?? Please help and let me know. I am getting nervous after bicalutamide failed in less than 2 years.

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Domas profile image
Domas
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11 Replies
MoonRocket profile image
MoonRocket

Many on this site have and are using Xtandi 5+ years.

RyderLake2 profile image
RyderLake2

Hello,

I took Xtandi (enzalutamide) for five years before it started to fail.

Kaliber profile image
Kaliber

I’ve been on Xtandi for nearly 6 years now and have heard of guys using it 7-8 or more years. Still working great. APCa is very different in different people, many variations exist. How Xtandi works for you may be quite different than how it works for me or others. There is no one size fits all, so to speak.

❤️❤️❤️

Domas profile image
Domas in reply toKaliber

Are you taking Xtandi everyday? How many pieces per day? Did your doctor ever suggest to increase or decrease the amount of Xtandi during the past 6 years? Are you taking something else in addition to Xtandi such as Lupron etc or no more? Yesterday, I went to Hospital and obtained PSA=0. My doctor was silent about these issues. I am still scheduled with Zoladex in 3 months. I don't want to disturb this "Complete Response" at all. I am taking 4 pieces of Xtandi everyday, but I am afraid about possible side effects. At the same time, I don't want to lose this momentum. During this period, I want to find ways to survive and prepare. Every Wednesday, I do a 4 hours mountain hike in Bear Mountain area in New York, a 1 hr distance from New York City and walk on sand beach in NY Jones Beach 14000 steps with no shoes (bare feet) twice a week. I want to do whatever I can do "while Xtandi is working". Now, my big question is whether or not I have to increase or decrease the amount of Xtandi from time to time...... I am really afraid that it may become resistant if I change the amount of Xtandi from time to time (including vacation).

Kaliber profile image
Kaliber in reply toDomas

Hi Domas,

I take the full dose every day ( 160mg, 4 football pills ) along with Lupron. I also had a total of 54 infusions of Zometa along the way. Not getting Zometa anymore. I’ve been undetectable for about 5.5 years now. My main desire is to stay alive , and if it’s not broken , don’t fix it . I won’t willingly rock my boat because I’d be concerned messing with what’s kept me alive so successfully.

Just IMHO , your choices / experiences may vary. This works for me.

❤️❤️❤️

Magnus1964 profile image
Magnus1964

I was on xtandi for 4 years. If xtandi and casodex have failed you could try Zytiga if you haven't tried it yet.

Domas profile image
Domas in reply toMagnus1964

Yesterday, I went to Hospital and obtained PSA=0. Now, what do I do? Do I stop Xtandi? or continue Xtandi? or reduce the amount of Xtandi? May I have your experience? Doctor the other day said that I could reduce to 3 from 4 per day. I said I am uncomfortable of reducing it to 3.

Magnus1964 profile image
Magnus1964 in reply toDomas

Reducing to 3 per day may be ok. If your PSA changes you can always go to 4 per day. I don't think it would hurt. Remember, you are trying to "live" with your Pca not "Kill" it. The less ADT drugs you take the better.

Justfor_ profile image
Justfor_ in reply toDomas

I am taking 1/10 the dosage of good old Bicalutamide and VERY comfortable with it.

God_Loves_Me profile image
God_Loves_Me

I do agree with your Mo. It is important concerns as well. I would suggest you something that has no clinical trial data available.

- Try to get radiations treatment that will reduce tumor and control the PSA.

- Try to enroll in the clinical trials that allow you to take Xtandi + Clinical trial drugs

- Try to get Provenge with xtandi

- Also there are few BAT trial + Xtandi

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Derf4223 profile image
Derf4223

Your age and country of residence are missing from your bio.

With that said, what does your MO say about abiraterone?

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